Priorities for Treatment and Services Established By the Combating Autism Act: Costs and Outcomes

Background: The 2006 Combating Autism Act or CAA is the most ambitious national research strategy focused on ASD to date. In response to growing concerns about the prevalence and impact of ASD, the InterAgency Autism Coordinating Committee or IACC was created via CAA to establish research priorities to allocate federal research funding. Between 2008 and 2013, IACC helped to direct more than $1 billion from the US National Institutes of Health or NIH alone. Researchers and advocates have begun to question IACC’s emphasis on basic health science relative to interventions, and the extent to which this emphasis has translated into improved outcomes for the population of people with ASD. To date, only a handful of independent researchers have sought to systematically reconsider IACC’s priorities and potential impact.

Objectives: To establish how much of the research (and resulting publications) funded by the NIH between 2008 and 2013 to address issues related to treatment or services for people with ASD resulted in testable interventions or services, especially those used in home- or community-based settings or targeting underserved populations.

Methods: Using the Autism Research Database, we assembled all NIH-funded research grants between 2008 and 2013 that addressed questions 4 (Treatments and Interventions) and 5 (Services). We have also begun to assemble all publications linked to these projects using existing federal databases supplemented by Pubmed/Psychinfo searches as needed. We have begun to conduct title, abstract, and full-text reviews as needed to identify the subset of these research projects and publications that either tested a specific and immediately applicable treatment, or that identified or sought to overcome specific barriers to treatment implementation (e.g., training, access to services, etc.). Within this subset, we are categorizing articles according to population, treatment focus, treatment setting, and treatment implementation.

Results: About 20% of the NIH’s ASD research funding between 2008 and 2013 was directed to Treatments or Services, significantly falling short of targeted funding allocations in many cases. Preliminary analyses reveal that less than two-thirds of these projects, and the publications which resulted, tested a specific treatment or considered specific barriers to implementation: other projects instead examined animal models or factors theoretically contributing to improved intervention or services. Many of the grants and publications that were focused on testable treatments were not home- or community-based, instead relying either on specialized settings, professionals, or levels of support. A small proportion of total research funding and publications addressing testable treatments or services focused on traditionally underserved populations. Very few grants and publications looked beyond specific treatments towards implementation barriers at the local, regional, or national level.

Conclusions: A small proportion of the research funded by the NIH between 2008 and 2013, and the publications which resulted, actually tested a specific treatment or service. The paucity of research on treatments that are community-based, or that address persistent barriers faced by underserved populations, limits the likely impact of the knowledge gained on the lives of people struggling with ASD right now. Implications for future research and policy are discussed.